04 Jun Breastfeeding your baby with Down Syndrome.

I feel I need to write this post because I had such trouble with breastfeeding Ariel at the beginning, and I could not find much on the net about breastfeeding and Down syndrome to reassure me at the time. I hope this helps someone who maybe going through what I did.

Ariel was born 10 days early and spent the whole time in special care. I expressed milk for her to be tube fed. The day before we were due to leave they started her on a bottle and we tried breastfeeding. She was doing ok on the bottle but breastfeeding was not. I was allowed to stay in one more day and Ariel was transferred out of special care to my room. On this day the lactation consultant came in but we did not have any success. Ariel was not even able to stay awake. I ended up going home with no “skills”. I was told to not expect too much and she may not be able to ever breastfeed.

Luckily I had a small breast pump at home already. I was determined to breastfeed my baby. Unfortunately she was determined to sleep the entire time. I was expressing milk one breast at a time and that was taking around 40 minutes. Then to get my baby to drink her milk was taking a further 40 mins to 1 hour. She was so sleepy and had very low muscle tone. I really thought I was going to go mad. It was such a difficult time. Of course at this point everyone wants to give you their opinion and advice. Some of it was good and some just made me feel worse. The best advice I received was from a friend and from the early development centre nurse.

Good advice from friend: Rent a hospital grade breast pump from the chemist so you can express in half the time.

Good advice from nurse: Babies with Down syndrome can breastfeed so if that is what you want be patient and persevere.

It took around 2 months of expressing milk and feeding Ariel the bottle. She simply wasn’t strong enough. She choked, vomited and took forever to drink only half her allocated milk at a time. She wasn’t gaining the amount of weight she was “supposed to”. I was so stressed out and was not getting much constructive help. I searched online and didn’t get much there either. I think I found one or two blog’s that gave me a little information and the peace of mind that I wasn’t actually doing anything wrong.

After about 2 months I tried putting Ariel on the boob and all of sudden she just got it. Once she got it we didn’t look back. We are still breastfeeding now twice a day at 16 months old.

Turns out I was actually stressed out for nothing. You see babies with Down syndrome are a little bit different to other babies. Here is how

They can be smaller and put on weight slower.

They are not as strong as they have low muscle tone and they can be extremely sleepy. They will get stronger and they will become less sleepy.

They have their own growth chart so make sure when your baby is getting weighed and measured this is the chart he or she is measured on. I got sent the right growth chart by Down Syndrome NSW and passed it on to my paediatrician. It took a lot of pressure off.

If you don’t know these things you will feel frustrated and like a failure. Like I did. It is not a nice feeling. I cried a lot.

I wish I knew all of these things back then so that is why I am passing them on to you. I hope it helps. Don’t stress and above all enjoy your baby. x

Raylene Barton

Well done Mama! Through perseverance and dedication you did it! <3 I faced many challenges with my twin girls (both had tongue ties snipped, flat nipples, mastitis etc) but I was also determined and it magically turned out perfectly and now at 19 months they're still having around 3 feeds a day 🙂
Yay for you. Beautiful story xxx